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Disaster
Hello All, Well, my sister had her neo on Oct. 7th. I just returned home after taking care of her in San Diego. It has been a nightmare from day one. I had told her to find out how many of these surgeries he had done and his nurse said about 45 a year so I was relieved at that. Wrong information! I got to S.D. a few days early so I could discuss things with her surgeon. Well, both the surgeon and assistant surgeon were out of the country until right before her surgery and were unreachable. She wanted to go ahead with the surgery anyway in spite of my misgivings. From all my research I was under the impression that if there was any cancer in the opening to the urethra or in the urethra that everything should be removed and she should be fitted with an external bag.
Well, after a 10 1/2 hour surgery I finally get to talk to her doctor. He said the surgery took so long because he had to cut the urethra back 3 times to get rid of the cancer!!!!!!!!!!! Didn’t he know that women have a short urethra to start with!!!!!!!!!! Well, he was convinced the surgery was a success. About 5 days later he comes into her hospital room and says that he got the final lab results and there is still cancer in her urethra and in the tube going to her kidney!!!!!!!!! Needless to say I was in shock. He said he was planning to go back into surgery and give her an external bag but he called a “specialist” in Los Angeles and the specialist advised him not to do that but just to WATCH IT!!!!!!!!!!!!!!!!!!!!! He said that if he went to the external bag now, she could have diarehha (spelling?) that was almost impossible to control. So I asked if she would be getting Chemo and he said no that they were just going to watch it. So 11 days after her surgery I get her home.
The instructions from the hospital said she was to have a follow up apt. with the surgeon in 10 days. Well, nobody called so I kept calling his office for at least a week and they kept telling me he had no apts. available. Finally I got really upset and said she needed an apt. now to check the cath they had left in her. The nurse finally told me that her surgeon had been out of the country again and wouldn’t be back until November 4th!!!!!!!!!!!!!!! I tried, for my sister’s sake, to stay calm. I said they needed to make an apt. with the asst. surgeon IMMEDIATELY!!!! WELL, he removed the cath and wanted her to self cath 4 times a day and flush her new bladder!!! My sister had brain surgery and can’t learn new things very well so he agreed to twice a day. I have notes all over the walls telling her the steps on cathing so she finally is able to do that. The doctor made a follow up apt. and said for her to go give urine and blood a few days before her apt.
Well, we did that and then, right before I left his office called and cancelled the apt and said would reschedule. Well, of course this has not happened. I’m sorry to go on and on but, believe me, I have only listed a small part of the seemingly incompetent behavior of these surgeons. My questions are these…1. Am I correct in thinking that they should have gone with the external bag as soon as cancer was detected in the urethra while she was still in surgery? Especially after snipping back 3 sections of the urethra because of finding cancer? 2. Do you think she has any hope of contenence with even a shorter urethra? (She has ZERO contro now) 3. Do any of you have any suggestions about where to go from here? 4. Do you think she should be having chemo?
I’m thinking that the total incompetence shown by this Kaiser doctor should warrent them paying for her to see an outside specialist. I am just so sick about all this and she my sister is so amazing. She is going to sit down exercise class and is driving and I love her so much. I couldn’t function with having gone through 5 different cancers and then this disaster in 2 1/2 years. Thanks for any words of advice or encouragement Love, Barbara
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23 Replies
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Thanks Pat, The Guthrie one was it came right out and said contraindications include “malignant involvement of the bladdr nck or urethra” Had a real hard time getting it to print but finally had success! THanks, Barb
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Thanks Kathy, The Stanford one is perfect. It says”cannot have cancer in your urethra” The other article said the appendix could be used to change to catherterizable stoma type thing. I had read about this before the surgery and had planned on discussing it with the doctor before the surgery but he was out of the country. I couldn’t believe it when he came in after the surgery boasting that he had removed the appendix while he was in there so there goes that possibility Thanks again Barb
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Here is a short and to the point article
http://cancer.stanfordhospital.com/forPatients/services/surgery/neobladderReconstruct/default
And here is one explaining how to change a neo-bladder when there is cancer in the urethra
http://cat.inist.fr/?aModele=afficheN&cpsidt=18218232 -
You won’t have to do much searching ..here’s a few more contraindications if the urethra is involved………
http://www.ncbi.nlm.nih.gov/pubmed/16830152
This one is a pdf file
http://www.guthrie.org/aboutguthrie/opportunities/employment/physician/august_2007.pdf
Its just common knowledge……???Pat
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Hi Pat…Barb here. When you say that “all pretty much agree that if urethra involved…No Neo” can you send me any examples where that is written by doctors. I am going to make copies of them and highlight them where they state that and mail them to the stupid doctor. Thanks, Barb
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hmmmmm…i missed that. The ureter they can cut back to a degree but all pretty much agree that if the urethra is involved…NO NEO.
Pat -
Hi Pat, Barb said that there was cancer in one of the tubes going to the kidneys.Unbelievable! Kathy
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Did i miss a post about the cancer being in one of the ureters? Pat
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Dear Kathy,
Thanks so much for your words of encouragement. With cancer left in there, it seems like all this suffering she is going through was for nothing. I really don’t think she is ever going to regain continence since he shortened her urethra so maybe, when she gets fed up with constant flow, she will be willing to do something about it. I just hope the cancer hasn’t spread in the mean time. Thanks again, Barb -
Hi Barb. My heart breaks for you and your sister. Besides her urethra having cancer, I’m worried about the cancer in one of her ureters. I can understand why she is not ready to do anything yet as she is still trying to recover from the neo-bladder surgery and the horrible post surgical report. Maybe after she has healed more she may change her mind but it would probably be major surgery again since both the urethra and ureter are involved.
A threat to sue might be all she would need to do to get the funds for another surgery, should she ever decide to have one. To have been treated for and survived all of those previous cancers then end up with such a botched surgery really is a crime.
I’m sure your love and support mean a great deal to her and I can understand your feeling of helplessness. Please remember that we’re here to support you anytime. Kathy
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I am so sorry to hear about your sister. Words can’t express how I feel. You are a wonderful sister to be helping her through this ordeal.
I just wanted to say that I had an RC in Sept. and had to have a “bag” because of colitis of the colon. I am completely happy with it and it should not be concern for your sister. In fact, knowing the pros and cons of all the diversions, I would choose the bag. Yes, there is something unnatural on your stomach but I adjusted immediately. I can empty anytime, anyplace without catheters to carry around. I never think about it anymore, only every 4 days when it is time to replace the bag and that only takes about 10 minutes, max. There is no leakage and no cold toilet seats to sit on. I have had a couple of bag leaks in the beginning but once you find one fitted to you, it is not much of a problem.
Balihigh
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
:kiss: This is a message to all of you. I want to say “Thank You from the bottom of my heart for your loving support” I have been researching the doctors for second opinions etc. I just had a long talk with my sister and she has informed me that she just can not handle anything else right now. She just wants to continue with the cards she has been dealt and doesn’t want a second opinion so I must respect her wishes. In spite of her having zero control she has been going to her aerobic exercise class. Don’t know where she gets her strength. I’m sorry that all your wonderful advice was for not. Your words of love and encouragement have been so important to me. I’m crying right now because I can’t help her with anything but my love and support. Thank you, Barbara:kiss:
Sorry Barb…..what i meant was that if there is urethral involment at the time of cystecomy the surgeon if he’s capable can do an Indiana Pouch on the patient or of course, the ileal conduit(anytime there is urethral involvement the urethra comes out and things change on the OR table..the urethra always comes out with the Indiana anyway)……but once the neo is made i don’t know of anyone that can then do the Indiana after the fact..it would use up to much intestine. You really need a Top Notch surgeon to do any correction here and certainly a consult since the cancer is still in the urethra.
Yes the docs i gave you at City of Hope and USC/Norris i thought were within the Kaiser system..just not convenient to San Diego…tho i’ve actually driven it at 3 in the morning and made it in 2 hrs!!!..can’t do that during the day..LOL… I could be wrong…i thought i pulled up a list of sytems within the Kaiser network in California…but my brain is a bit fuzzy. You might call them.
I’ll send you those papers in a PM….try to reply again…just answer with anything and then i’ve got you on my PM list. Sometimes it will kick back but try again and it might work. Thats happened to me a few times.
Pat
I have no words to this disater. My goodness, what a mess. I can only give you my shoulder to lean on Barb and send prayers for your sister.
Ta Grade 1
6 TURBS
15 BCG
dx Jan 07
Dear Pat,
Oh my gosh you are so wonderful! I got your email but when I tried to respond it kicked it back. Yes, I would love you to tell me about papers on diversions and why a neo should never be done when the urethra is involved. If there is any way I can convince Kaiser to pay for an outside specialist I will need all the help I can get. Did I understand you to say that an Indiana CAN be done after a neo? A list of doctors who do that proceedure would be very helpful. I searched out one of your old messages and you mentioned the two Skinner doctors at USC/Norris and about Dr. Wilson at City of Hope. Are these the doctors you thought could do the Indiana after a neo? Thanks to you I’m not feeling so alone anymore. Now, if I can just convince my sister to go for a second opinion. My mind is filled with nothing but trying to help my sweet sister. Even though I am home in Sacramento, if I hear a noise at night, I sometimes call out her name wondering if she is OK. Looks like I may be going back to San Diego. It’s a good thing I have such a wonderful and understanding husband. Thanks again, you dear sweet lady, BarbSign In to reply.
